Our roller coaster ride with neuroendocrine cancer, parenting, and life.

Author: coasterredforest

This blogging experiment began almost 2 years ago when my DH was diagnosed with neuroendocrine cancer. If you are new here, you can check out older posts to learn what the heck that is. An update on that front: Don continues to do well, especially since his surgery in June 2017. He still gets his monthly shot of sandostatin and any symptoms or side effects are minimal. (Or else he just pushes through them and doesn’t tell me.) Just this week he had his first gallium-scan since June 2018 and we were happy to hear that no new NETs were found. The existing spots are still there, but have not grown. In cancerland this is good news! We are not the experts of living in cancerland, but we are residents here, so we are always learning the ropes. A good scan is a good day!

Also this week the boys and I had the chance to see the film Angst about living with anxiety. I made the boys go and while they said “We already knew that stuff” I am sure they learned a little something. I definitely did! The biggest lightbulb moment for me was how being honest about the fact that I deal with it is the first step to figuring out how to manage it. I was thinking about a few friends whose children deal with anxiety on a regular basis and how hard those moments must be. And then I had this moment of clarity — if my kid had cancer, of course I would pay for him to get treatment. There would be no end to the treatment I would seek! But why do we (in our society) pause and not seek treatment when there is illness of the mind/heart/emotions? Why do we resist seeking counseling when it could be the very answer to the issue? And much less costly than treating cancer. I’ve had this perspective for years — since counseling definitely saved my life in the late 1990s when I was depressed — but I’m glad to have it bubble up with clarity again.

A few days ago I stumbled upon a podcast interview with Anne Lamott. Anne is one of my favorite authors and certainly one of the great sages of the 21st century … authentic, awkward, funny, and says the stuff most of us won’t say but want to, with a lot of grace, a few curse words, and a little bit of church and Jesus thrown in. This episode was about creating — being creative — and how one needs to just do it regularly. Start with shitty first drafts, and then let the process unfold with the diligence of doing it. She says that everyone has the voices that tell us we have no talent, or are not enough, and she calls those voices misguided helpers. I can totally relate to this, as I have a few voices pinballing around my head now and then that will toss in a grenade of self-doubt or criticism and sometimes it’s hard to ignore them. But Anne gave this great tip: imagine the voices as little mice running around at your feet. Grab them by the tail, one by one, and drop them into a mason jar. When you have collected them, place the lid on the jar, and set it aside. Then get on with your creating. The voices are silent. You have acknowledged them, you know they are there, but you have set them aside to proceed with your project, your passion, or whatever it is that needs your focus. This is a breakthrough tip for me. The voices are there – they are part of being human – but we don’t have to let them stop us. Acknowledge them, set them aside, and carry on.

Finally, Anne reminds us that we are pre-approved. We are alone on our journey, but there are people all around who will never let us fall and not get up. We know what fills our heart with gladness and that feeling of accomplishment. We just need to do those things and along the way make more messes, have more failures, try & fail, try & fail, and learn to fail better. Messes and failures are gifts along the journey. The more we make them, the better we get at creating, and the better we get at this thing called life. I don’t know about you, but this sounds like a good way to start a new year.

Day 12 – It seemed Hezekiah was quite content resting amongst the trees. The journeymen could not convince him that the break was over and it was time to move on.

Day 13 – This time it was Melchior that led the treacherous climb. Only he and Hezekiah knew he had been secretly training for Desert Ninja Warriors.

Day 14 – They had heard Hezekiah speak of the strange desert beast, but this was the first time they had seen it with their own eyes.

Day 15 – Gaspar took the lead today, insisting he knew this was the best path toward the star. The others quietly doubted him, but opted to let him lead for a while, because that’s what friends do

Day 16 – The icy trees and the angelic music were a lovely – albeit completely wrong – side route. The travelers will have to turn around, again.

Day 17 – Balthazar and Hezekiah insisted this was not the right place for a rest, but Gaspar and Melchior thought it would be a fun stop.

Day 18 – The Japanese Sage reminded the travelers, “猿も木から落ちる。” (Even monkeys fall from trees … everyone makes mistakes) and encouraged them not to give up on their journey. Finding the star would be worth it in the end.

Day 19 – Surely the mysterious boulders had some kind of important message. But what could it be?

Editor’s note: I realize my version is historically inaccurate — their journey would not have ended in the stable on Jesus’ birthday. But I had to roll with it due to holiday travel. I will plan better next time! 😊

I have missed you. On many a morning I have gotten out of bed with thoughts I wanted to share, but then life/schedule/kids/job got in the way. I bet you can relate. Tis the season.

Then I ran across the Wandering Wisemen (look them up on facebook or Instagram)! I was so delighted by their posts and antics I decided to copy their idea and do my own version. You may have already seen theirs or mine on social media. It has been a fun way to reflect on the season of Advent as the seekers journey towards the light that will change the world. I believe we are all seekers of one kind or another.

Day 1: The star appeared with surprisingly little fanfare, noticed only by those dedicated seekers who had patiently awaited its arrival for so many years.

(Day 2: No pic or post on this day. It was before I really took the plunge on the project.)

Day 3: Ultimately, it was Hezekiah the camel who demonstrated the necessary leadership to unite the travelers and set their course for the long journey ahead.

Day 4: Although oddly calming in stressful situations, the small globe proved to be an ineffective navigational device.

Day 5: Despite the strange climb and the beautiful view, upon closer inspection the travelers realized this was not the star they meant to follow.

Day 6: It’s only Day 6, but what a long, strange trip it’s been.

Day 7: The journey with the Star continues. Those are stars, right?

Day 8: A little light in the darkness brought comfort to each traveler.

Day 9: An oasis – finally!

Day 10: So it seems they are not the first seekers to visit these parts.

Day 11 – Balthazar’s rock climbing hobby proved to be an asset on the journey. But he couldn’t understand why the others had trouble keeping up with him.

Stay tuned for the second half of the journey. Or better yet – start your own! Wishing you a whimsical Advent with a little quiet time to seek the light.

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Shout Out – Felted nativity characters are handmade by my friend ArtsyAnn and her team. You can find her on Etsy.

Lillian turned 92 today and I was lucky enough to spend a few hours with her. She is a member of our half-day program at a local church. You may recall that I work for a nonprofit that provides day programs for aging adults with chronic diseases – mostly Alzheimer’s or similar dementia. Music from the 1940s and 1950s was playing as the members arrived, usually with their caregiver who is a spouse or adult child. Everyone says hello, gets settled, and has a snack. I was so touched when I watched each caregiver helped their loved one get comfortable and slowly greet each of the members personally.

Lillian was one of the last to arrive today, and we had the throne and crown waiting for her. Even the Happy Birthday welcome sign was ready! She arrived and we got her settled and took pictures. She has white hair, a beautiful smile and was dressed to the nines. I think she knew it was her birthday but I can’t be sure. Daily awareness can vary amongst the members and can even vary from moment to moment! As we passed the birthday card around for everyone to sign (Brenda, another member, is in charge of the cards), Dotty said, “Who is Lillian? I don’t know her!” – even though they spend several days a week together – so I pointed over to Lillian and Dotty had a brief moment of recognition and signed the card.

Usually each day begins with news headlines and puzzles like word search or connect-the-dots, but today we began with a “We Love Lillian” activity. Each member had a chance to share what they loved most about Lillian.

Humble
She’s honest
She’s a sweetheart
She looks 13 years old
She’s very nice, I like her, and she’s my friend*
She has a beautiful smile
Kisses
She’s Winnie the Pooh, she likes honey
She is

*Darlene also said, “Lillian was the first person who welcomed me here! She’s been my friend since the beginning.”

After snack and the Lillian game, we played a game of bingo. Thankfully these were the large print bingo cards, because I need them just like the members do! We used poker chips to cover our bingo numbers when they were called (poker chips in a Baptist church – don’t tell!) and eventually most everyone had BINGO before we finished filling the cards. Seriously, who doesn’t like bingo?

The director of this program is an amazing woman named Louise. She is an artist and was formerly a preschool director for many years. The parallels between working with preschoolers and seniors are remarkable. One needs patience, flexibility, the ability to offer guidance but not “do” for the student/member, and certainly a sense of humor. Louise has all of these and more. She is supported by two volunteers each day, and these women and men are also gifted, lovely people. It’s a joy to spend time there and learn from the best!

I had to leave before lunch but what a treat it was to start my day this way. Of course it prompts me to reflect on my life and career. As a mom, I know what it’s like to parent/guide preschoolers, children and teens (at least I have a slight clue on this last category). And in my last job I was working with adults with developmental disabilities, so I learned how to be patient and listen as those friends communicated and explored their daily routines. And now the gift of working with aging adults! I truly feel as though my life experience to this point brought me to this place. It’s a sobering and exciting realization to see how your past experience has prepared you for the current one. Aren’t we lucky to allow each chapter of our lives to teach us and prepare us for the next step?

When I left the program and I popped in to early voting before heading into the office. I hope the candidates who got my vote are ready and willing to serve the least among us — the children, the disabled and the aging adults, and all of us in between. I like to believe they are. I hope and pray they are. It would be lovely to reach 92 like Lillian has.

It’s been a busy couple of weeks in neuroendocrine cancerland. We lost a supremely talented American with the passing of Aretha Franklin. And did you know that she succumbed to pancreatic neuroendocrine tumors aka pNETs? You can read the blog post from the American Cancer Society and from Aretha’s physician and the Healing NET Foundation if you’d like more info. While we hate losing anyone to this disease, it’s nice to see some accurate press about it. There have still been plenty of erroneous reports of pancreatic cancer, but all-in-all more accurate press this time. One of the biggest challenges of NETs cancer is folks being misdiagnosed for years, ultimately inciting more confusion about this uncommon cancer. There was a beautiful (and long) service celebrating Aretha’s life and talent just yesterday. It’s never easy seeing a light like hers go out. I know I am thankful for the gifts that she shared with us! RESPECT!

Speaking of loss, we also lost Senator John McCain this week. He gave us an amazing example of courage and generosity of spirit which I believe made an impact on our world. I probably did not agree with him on many political issues, but I definitely admired him for his service to America. He leaves a big hole in our political landscape, that is for sure. More respect!

I’m finally reading Kate Bowler’s Everything Happens for a Reason (and Other Lies I’ve Loved) and it is blowing me away. She writes, “We are all floating on the ocean, holding on to our own innertubes. We’re all floating around, but people don’t seem to know that we’re all sinking. Some faster than others, but we’re all sinking.” I know this is true and I realize that most don’t really want to think about it or talk about it. But for me this has been the big lesson of our family’s journey roller coaster ride with neuroendocrine cancer. Right now we are floating along without any major holes in our tube, although obviously we are slowly sinking right along with everyone else. Fingers crossed that it will be awhile before we have to deal with too much water leaking in.

I hope you are floating into fall without too much sinking. Nice to know we are floating together, don’t you think?

Note: If this sounds vaguely familiar, I mentioned Kate before in this blog post from Feb. 2018.

I wasn’t sure if I would love it or hate it, but it turns out that cruising is pretty great! The four of us took our very first cruise last week and we loved it! Four days in the Bahamas (aka “entry-level cruise”) was perfect. We stayed in a suite which had a balcony with endless views of the ocean.

Atlantis

Our first port excursion was to Atlantis. Wow. That place is HUGE! Don and I spent most of our time on the mile-long Rapid River while the boys tried all of the big slides. The grounds and hotels are beautiful. We would love to visit there again someday!

Our second port excursion was supposed to be snorkeling trip, but it was cancelled due to winds and high waves. Bummer. So we opted to spend the day on a beautiful little island. The island was lovely but the

Beautiful island & beach, but don’t get in the water!

“swimming and snorkeling” beach was disappointing! The ocean floor was covered in sharp and painful shells and rocks so while they tried, Don and boys did not stay out in the water very long. Next time we’ll know to come prepared with water shoes!

This trip was a splurge for us, but we were celebrating a year of good health! Last summer our vacation was spent at Duke Medical Center while Don underwent and recovered from his surgery. One of the biggest lessons of cancer is to cherish the time you have with your loved ones since we have no guarantees for tomorrow. Really, this is a gift, not just a lesson.

We are happy to see that NETs cancer got some national press on the Megyn Kelly TODAY show this week. Gil Schaenzle is an amazing woman that we had the chance to meet a few months ago at a regional NETs gathering. She is doing all she can to raise awareness of NETs cancer in memory of her daughter, Anna, who succumbed to the disease in 2017. Watch this video to learn more. We remain overwhelmingly grateful that Don somehow pulled the lucky straw and has the non-aggressive version of NETs. He will most likely live for a few more decades with more good days than bad.

So if you haven’t already, hug your loved ones today. Take a few days and head to a change of scenery with your favorite humans. The beach, the mountains and the National Parks are waiting for you. Today is our only guarantee.

It seems this month’s Life Lesson is about quality of life and feeling good.

I recently started a new job with a local non-profit in the aging services industry. I am responsible for building and expanding the fundraising efforts that help cover the costs of providing day services to older adults. As a middle-aged woman with older parents who might eventually need these kind of services, I am watching and learning with keen interest during my orientation. Guess what? We cannot stop the aging process! Who knew? Therefore, when it comes to providing services for older adults, the key factor is doing so with dignity and respect — so their quality of life can remain good, and so they can feel good. And so that their caregiver can get some respite, knowing their loved one is being well cared for during the day.

Thanks, Google. A snapshot from an adult day center, in another state, not where I work, because confidentiality.

Do you know where else I have heard this lately? Earlier this month when Don and I were able to hear one of the leading NETs doctors speak. One of his main points was knowing how to treat the disease so that patients had a good quality of life and are feeling well. The cancer may be incurable but the treatment can still give patients a longer and a healthier quality of life. Dr. Liu’s key question is “how are you feeling?” which guides his approach to next steps of treatment.

This is so wise! How am I feeling today? Will eating that cheeseburger and fries make me feel good? Will putting off that dreaded phone call make me feel better or worse? What next steps should I take so that I am feeling well – both physically and mentally? In our 100 mph American life we are usually so distracted and stressed that we lose sight of making the choices that will ultimately help us feel better. Today I caught on to this month’s Life Lesson.

Our roller coaster ride with neuroendocrine cancer has also taken a nice turn. Don got a great report this month. His disease is stable – no new lesions and the existing lesions have had no notable growth in 6 months. We are grateful for knowledgeable and experienced physicians who know how to treat this disease and care for their patients with dignity and respect.

What helps you feel better and enhances your quality of life? Please comment below to tell me what comes to mind. I would love to learn from you and hear your thoughts.

Did you know a group of zebras is called a DAZZLE? Yesterday we had the chance to hear the #1 US expert on neuroendocrine cancer. Dr. Eric Liu practices in Denver, CO but was speaking in Raleigh last night so we didn’t want to miss it! Fifty or so people (about 25 zebras + guests) were crammed into a dining room at a Hampton Inn in Raleigh. You may recall that NETs patients call themselves zebras because NETs is such a unique cancer (“when you hear hoof beats you think of horses, but maybe it’s not?”)*. Did you know that there are about 80 different types of neuroendocrine cancers? Wow. Dr. Liu said there were probably 200,000 NETs patients in the US. If you consider that there are expected to be over 330,000 breast cancer diagnoses just this year, it gives perspective on how unusual NETs is.

Last night was quite a gathering. Dr. Liu spoke about his medical journey that led him along the path to become the foremost NETs expert in the U.S. In addition to being a brilliant physician and surgical oncologist, he is also a caring and funny human – we liked him immediately. Then we heard from Gil Schaenzle, who lost her daughter Anna in 2017 to one of the more aggressive forms of NETs. Gil is now walking all of the US National Parks in memory of Anna, to raise awareness of NETs cancer and raise money for the Healing NET Foundation. Finally, after dinner, Dr. Liu spoke about the latest treatments and upcoming research for NETs, as well as answered questions from the crowd. It was hugely informative and comforting to be with a group of people from around NC (and a few from TN and VA) that were also dealing with this disease. Don was the “youngest” zebra there (diagnosed only about a year ago) and the “oldest” was someone who has been living with NETs for 12 years. These people were all ages, all genders, all races … all living with this strange and mysterious cancer. Talk about dazzle!

Don’s surgery was a year ago, on June 14, 2017. You can read about it here. He still sees his local oncologist, Dr. F, for the monthly sandostatin shots and sees Dr. M, the NETs specialist at Duke, quarterly for a scan and visit. This could change from quarterly to every 6 months – TBD. We are both joyful and grateful that the year has flown by and Don is feeling good. We expect this to continue for many years.

Sources:
* A “hoofbeats” example – Don’s NETs appeared as tumors on his liver. At first glance, one might think it was liver cancer, but it was not. It was neuroendocrine tumors on his liver, which originated from his small bowel. This is just one of the 80 different types of NETs.
* http://www.breastcancer.org/symptoms/understand_bc/statistics
* To learn more, check out these Ten Facts on NET.